In Sickness and In Health

Diagnosing frontotemporal degeneration is just the beginning of the challenge.

Photo by Jared Castaldi

Bob Karger and Sandy Davis were in love. They’d graduated from Springfield High School in 1956 with every intention of getting married. But their parents intervened, insisting that the two go to college, meet new people and create lives for themselves.

They did just that. Karger moved to Colorado and became an executive with Hino Trucks, the largest manufacturer of diesel trucks in the world. He married and had five children. 

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Davis, meanwhile, attended nursing school, married and had three children. She became director of volunteers at Bryn Mawr Hospital, where she stayed for 14 years before taking over as director of community services at Paoli Hospital.

 In 1995, Davis got a call from a yearbook company looking to update its records for Springfield’s class of ’56. By then, she was divorced and moving on from a difficult marriage. She got Karger’s number from the yearbook people. “I didn’t want to be inappropriate,” says Davis. “But I left a message at Bob’s office.” 

Karger called her back. He’d returned to the area and was living in Central New Jersey. He was also in the process of getting a divorce. 

Davis and Karger were married in 1997. Four years later, Karger’s struggles began. He had trouble finding the right words. There were bouts of extreme apathy and an inability to function in social settings. 

Sound vague? That’s why diagnosing frontotemporal degeneration is so difficult. Lumbar punctures, EMGs and PET scans confirm the presence of FTD. But those tests are usually done only after misdiagnoses by doctors unfamiliar with FTD. “[But] the sooner these symptoms are identified, the sooner patients can get to physicians who specialize in FTD,” says Susan Dickinson, who is the executive director of the Radnor-based Association for Frontotemporal Degeneration. 

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Dr. Murray Grossman diagnosed Karger with the disease. One of the country’s top specialists, Grossman is the director of the Penn FTD Center. The culprits, he explains, are neurologically nasty proteins that accumulate in the brain, wreaking havoc on its workings. The most common are tau and TDP-43, which are linked to neurodegenerative diseases like Alzheimer’s, Parkinson’s and ALS.

FTD patients usually don’t experience tremors, and they maintain their memories. That’s because the proteins accumulate in the frontal and anterior temporal regions of the brain—areas that control speech, cognition and social functioning. “FTD patients may become quite disinhibited, making inappropriate comments and being offensive without insight into what they’re doing,” says Grossman. “They may also develop complex, OCD-like rituals, like eating by using utensils in a certain order.”

Belief systems can also be affected. “Many FTD patients will become hyper-religious or have radical shifts in their political views,” he says.

But the most obvious symptom is difficulty in speech. “They have trouble articulating their thoughts and processing concepts,” Grossman says.

Karger has all of these symptoms, and, since 2007, he has been completely dependent upon Davis. He can’t be left alone, and his communication skills are limited. “It’s mentally draining for him to communicate and function,” says Davis. “It’s like going to a cocktail party in France, and you don’t speak French. Sometimes, he repeats the words he knows over and over again.” 

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Karger sleeps 16 hours a day. “From 1 to 4 p.m. and from 6 p.m. to 7 a.m.,” Davis says. “In some ways, it’s a respite when he’s asleep. But it’s very lonely.”

Davis could never have imagined that her second chance with Karger would include this final chapter. “There was a whole process of grieving over what could’ve been and being angry about what was,” she admits. “There are still moments when I struggle. I often feel hopeless and helpless. In those times, I rely on my strong faith. There are many hands in this, from Dr. Grossman to the people in the AFTD support group.”

Medications can help with behavioral side effects, and Grossman is confident other advances will soon be made. For now, though, no treatment can halt the advancement of FTD, and Davis knows the prognosis is bleak. She has a plan for when she can no longer care for him. 

But it hasn’t come to that yet. “Love” isn’t a word he has trouble saying.

Visit www.theaftd.org.

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